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So what have you tried?
3 Replies
TNUtammy - October 6

Hey all, I am new to this forum and just wanted to try and compile a list of treatments that other people with fibromyalgia have had success with, or at least found some measure of relief.

I'll save you the sob story and just say that I am 23 and have been dealing with both Fibromyalgia and Chronic Fatigue Syndrome since I was 17. I've tried a lot of things through the years and found that most of them just flat out don't work, or do not relieve the symptoms enough to warrant paying the high prices it takes to even try them.

I recently decided to take some time off from work and try the only thing that all doctors, therapists, specialists, etc. can recommend - diet and excercise. I've tried it in the past but even the smallest amount of activity causes so much pain that any normal person would just give up, especially when trying to hold down a job or do well in school.

Long story short, I've decided to give this one more shot and really stick with it this time despite the piles of unpaid bills that I'm sure will be on their way shortly. Managing my pain through diet, excercise, and alternative therapies is going to be my only priority for the next few months, so I'd like to know about anything that you've tried that has even remotely helped you manage your FM pain.

So...anyone had any success with Lyrica? Now that its been approved doctors are handing it out right and left. My doctor recently decided to let me try it, but so far all I'm having is dizzying side effects and wanting to sleep like the dead. Please tell me it gets better!

I've heard all sorts of alternative remedies, and even tried a few with less than exciting results...but there could still be something out there. The newest one I've heard is emu oil remedies, which actually makes a lot of sense. I got some New Emu samples from my pharmacy and they seem to help a little, but what's with all the extra stuff they put in there? Anyone know of an emu oil product that works, but doesn't have all that filler crap?

Another thing that was recommended to me was trigger point therapy. I'm doing some reading on the topic and thinking that I could either learn how to alleviate some of my own pain, or just plain injure myself further during the process. I'll let you guys know how that turns out, and hopefullyI will have the sense to stop if it ends up hurting more than what I'm already dealing with.

It looks like I'm going to have a lot of time in the near future to experiment with new products and remedies, so any information you have on products that DON'T work would be much appreciated too. At least then we would have a list of things not to try, and possibly save someone else the time.

While green tea is good for you and has a pleasant taste, it won't heal you. Just in case anyone was wondering...


Connie - October 6

Hi TNUtammy, Your plan to deal with this condition sounds great. I have had fibromyalgia for more than 25 years. During this time my symptoms have waxed and waned through numerous cycles. Stress Reduction seems to help, although I can't say it makes my symptoms better or worse. It does however help me cope with the pain and fatigue. The most difficult task for me has been forgiving myself when I need to rest or reduce daily tasks. I'm 54 years old and have an awesome husband who understands my frustration with pain and fatigue. We have created a home and lifestyle to meet our needs. Our home is unclutted and contains only items that we use and truly enjoy. I have a set of vacuums on each of two floors and cleaning supplies in the kitchen, laundry room and three bathrooms. When I see a need to clean something, everything is handy. I do little bursts of cleaning this way instead of knocking myself out trying to catch up. I use a PDA to keep notes, addresses etc. I can’t tell you how handy this little device is. I love the alarm for reminders and having everything in one place is wonderful. Synchronizing the PDA and my PC keeps everything up to date. The PDA is in a metal case which fits nicely in my back pocket or purse. My books are downloaded from the internet so I can read them on my PC or PDA. I like to take advantage of anything which can simplify our life. This gives me so much more time and energy for my family and art. I only wish I had reduced and refined my lifestyle and home when my children were living at home. It has given me so much peace. I love my DYMO labeler to mark my Rubbermaid storage containers. Love it! We also put all of our DVD’s and CD’s and computer stuff in labeled Discman containers. We use the online function to catalog the contents and print out the numbered lists for our collections. This has given us less to dust and shuffle around not to mention the ease of finding just what we want. Installing keyless locks on the outside doors has been great for me. After being locked out three times and having to crawl through the dog door, this problem is fixed. I tried putting keys outside buried in baby food jars, but couldn’t remember where I buried the jars! I am proactive with my physician, and we work as a team. I use a tread mill to exercise. Lyrica gave me very unpleasant side effects. My current “cocktail” of medications consists of Effexor, Cymbalta, Provigil (to stay awake), Tramadol, and Vicodin. For sleep I take a generic for Remeron. This works for me. It is bound to change as that seems to be the nature of the beast. Extreme Caution on these medications needs to be given. All of my medication is from one doctor and one pharmacy. A potentially lethal condition called Serotonin Syndrome happens to some people. Medications like Effexor,Cymbalta and Tramadol all raise serotonin levels. Google Serotonin Syndrome to gain more information. Know the symptoms and make sure your family knows them. I wear a medical bracelet to aid emergency and hospital care. As I stated, this works for me. Everyone is different. Read a lot and never stop asking questions. Good luck to you and best of health.


TNUtammy - October 7

Thanks for your reply Connie. I too am an organizer and all for anything that makes everyday chores easier. Like you, I do things when I can instead of all at once. I used to feel so bad about myself when I couldn't finish the things I needed or wanted to do, but I've finally come to the realization that its better to rest than to push yourself too hard. The biggest obstacle I've come against with this condition is knowing when to push myself and when to let it go, so you are not alone in this either.

I am also working closely with my doctor on this too since she will be managing my leave from work. I have actually only been to 3 visits with her since my PCP moved in July. My new PCP does seem very willing to help and openly admits that she is not an expert on fibro. I think in time we will be able to work together just fine, but its just kind of hard for me right now because my previous PCP did so much to help me. She helped me this past May when I had to increase my hours at work just to keep my benefits by helping me with my FMLA paperwork. If you're not familiar with FMLA, its an association that allows you to take a leave from work for certain situations. I ended up taking an intermittent leave which allowed me to take 2 excused sick days per month due to my condition.

My previous PCP also helped to get me started on the medications that would help me the most. I take muscle relaxers 3 times a day which helps some of the pain, plus I've also been known to get severe muscle spasms. She really helped me through one of the worst I had, lasting about 36 hours and pulling on every major muscle in my back, even into my shoulders and chest. She also started me on Ultram, but it didn't really seem to help me all that much. I've taken it for almost a year and a half without much success, so my new doctor told me I could stop taking it. I was kind of relieved because that stuff is expensive! I'm really hoping that I will have better luck with the Lyrica but so far the side effects are keeping me pretty dizzy and sleepy. I'm also taking Zoloft for some anxiety issues I've had for almost 10 years now. I started out taking paxil but switched to Zoloft somewhere along the line because it's supposed to have more energizing effects. My new doctor also determined that I have a minor case of hypothyroidism and prescribed Synthroid for me. I was hoping to start feeling a bit more energized with this, but I'm not really noticing much of a change. I'm trying a higher dose now that we had my thyroid rechecked, and thankfully its helping to combat the weight gain from a lot of the other meds I take, not to mention the fibro carb cravings! That's another thing I plan to work on in the next few months.

But anyway, my Zoloft, Robaxin, and Synthroid mix is working out quite well. I sometimes take Zyrtec for my seasonal allergies and Ambien to help me get to sleep. I probably don't even need to explain the sleep problem because I've noticed a lot of people with fibro have them too, despite the fatigue.

I've talked to several doctors about trying Provogil but am told that it might not be a good idea since I do not have ADD or ADHD and the drug has not been approved to treat FM or CFS. Due to my young age, doctors are reluctant to prescribe any narcotic pain reliever, but I think I'm going to have to start pushing for that in the near future. My doctor would rather see me give diet and exercise a fair shot, so that's what I'll do. I hope to get some benefits from it, but I know it cannot fix me. At least doing what they tell me and taking their suggestions will be a strong backing for when I end up having to ask for some better pain relief.

Thanks again for your interest, and I hope to talk to you again soon. Sorry for the long post. It really would be easier to read if the interface allowed for proper spacing and paragraphs, but we'll just have to do the best we can.


TNUtammy - October 7

If there is a moderator reading this, can we please do something about the paragraph spacing? I'm sure you've heard our multiple complaints of fibro-fog, and sometimes the long, unbroken posts are just too much for me. Thanks!



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